Transitions: Helping kids make the leap to adult care

In healthcare, transition refers to planning for and making the move from child to adult services. When the process isn’t managed well, young adults can fall into gaps in care and declining function, health, and quality of life. Transition takes provider time and energy, but reimbursement is available.

Young patients and their families should start early in their search for adult providers who fit their needs and understand their diagnoses. Surestep photo

More than 18 million US adolescents aged 18 to 21 years need to transition each year from pediatric to adult-centered healthcare, according to the US Census Bureau.[1] When youths, families, and providers work together on transition planning, researchers have noted significant improvements in patient satisfaction and in continuity of care and adherence to care.[2]

Improved adherence to care was the most commonly reported positive quality of care outcome found in a 2017 systematic review, followed by better perceived health status, quality of life, and selfcare skills.[2] The review identified increased adult visit attendance and less time between the last pediatric visit and the initial adult visit as the most common positive service-use outcomes.[2]

“This means looking at the individual first, not the disability; that is, they are person affected by cerebral palsy, not a cerebral palsy patient,” she said. “In pediatrics, person-centered transition care means starting at age twelve or even earlier—the earlier, the better—to have ongoing conversations about the future and quality-of-life issues. Saying, for example, ‘One day you will need to handle getting and taking care of your device by yourself.’ And then explaining some of what that might mean, such as the need to get a good job so you can get good insurance so you can afford the device you need.”

“You can start the conversation about transition from pediatric care by talking about transitions they might experience within pediatric care.” Todd DeWees, CPO

Yet, the vast majority of children do not receive any transition preparation, according to the 2016 National Survey of Children’s Health, a nationally representative survey of parents.[3]

Pediatric providers can help by starting conversations about transition early and by being open to conversations with their former patients’ new adult providers.

“When healthcare clinicians working in pediatric and adult care settings communicate with each other during the transfer of care and share records with each other and with youth and young adults, it assists the receiving clinician to offer better continuity of care,” said M. Carol Greenlee MD, chair of the American College of Physicians Council of Subspecialty Societies. She is co-author of a 2018 clinical report [4] on healthcare transition by the Transitions Clinical Report Authoring Group, written by members of the American Academy of Pediatrics (AAP), the American Academy of Family Physicians (AAFP), and the American College of Physicians (ACP).

The 2018 report describes and recommends the use of an evidence-informed structured healthcare transition process called the Six Core Elements of Health Care Transition,[5] developed by Got Transition, a federal initiative aimed at improving the move from pediatric to adult care. One of the key steps in Element 5, Transfer of Care, involves preparing a “transfer package” for the patient’s new adult providers with a readiness assessment, plan of care with transition goals and pending actions, a medical summary and emergency care plan, and, if needed, legal documents, a condition fact sheet, and additional provider records.

The Got Transition website offers a number of tools to help clinicians develop transition services. Its many resources include downloadable PDF packages with tools such as examples of transition policies practices can adopt, transition flow sheets, readiness assessments, and sample letters to new adult providers.

“Having the adult care clinician know something about [the new patient] and their medical issues at that initial encounter helps the young adult feel more comfortable with their new clinician,” Greenlee said.

Labhard agreed strongly, noting, “Children with certain conditions are now living longer than ever before and are moving into adult care, where providers may not be as familiar with their diagnoses or with dealing with a patient who is intellectually or developmentally challenged. I believe it’s up to the peds side to help those adult providers help the patients.”

Figure 1. Timeline for introducing the Six Core Elements into pediatric practices.White PH, Cooley WC, Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home[4]

Figure 2. Summary of Six Core Elements approach for pediatric and adult practices. aProviders that care for youth and/or young adults throughout the life span can use both the pediatric and adult sets of core elements without the transfer process components. White PH, Cooley WC, Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home[4]

Barriers to positive outcomes

Estimates of transition preparation among kids aged 12 through 17 years with and without special healthcare needs show that 83% of youth with special needs, including lower extremity conditions, and 86% of youth without special needs don’t meet the national performance measure for transition.[4] This composite measure, developed by the AAP, examines the extent to which

Youth had time alone to speak with the doctor or other healthcare clinician during his or her last preventive visit.

The doctor or other healthcare clinician worked with youth to gain self-care skills or understand the changes in healthcare that happen when youth transition from pediatric to adult care. and,

The doctor or other health care clinician talked with their pediatric patient about eventually seeing doctors and other providers who treat adults.

This lack of structured transition planning results in a number of poor outcomes, particularly for youth and young adults with special needs or chronic conditions, according to the 2018 AAP/ AAFP/ACP healthcare transitions report.[4] The long list of adverse issues linked to poor or no transition planning includes medical complications, limitations in health and well-being, problems with treatment and medication adherence, discontinuity of care, patient dissatisfaction, higher emergency department and hospital use, and higher costs of care.[4]

Transition can also be emotionally tough for kids with lower extremity conditions, said Todd DeWees CPO, a prosthetist-orthotist at Shriners Hospitals for Children—Portland.

“When patients transfer from pediatric to adult care they’re moving away from someone they’ve known and trusted for a long time, sometimes their entire lives,” he said. “Some young adults are transferring into practices that don’t see a lot of pediatric patients. Those providers may, for example, be more used to dealing with elderly patients with very different activity levels and expectations, so younger patients may not get the results they were used to in pediatric care.”

Kids with chronic conditions and disabilities may have additional barriers to successful transition: unstable living conditions, lack of a high school diploma or health insurance, geographical distance from appropriate adult providers, low income, and poor psychosocial functioning.[4]

Devices can present an additional layer of difficulty for patients during transition, Susan Labhard said. “A lot of patients and families don’t realize somebody has to write a prescription for the prosthetic or the orthotic, and that takes time, and that often it can no longer be the person who did it when they were in pediatric care,” she said.

When youths wait until they have crisis with their device, they may have to settle for care that isn’t the best fit for them, said DeWees.

“I tell kids and their families that they should start interviewing providers like me before they age out of pediatric care so they can find someone who they like and trust—and who understands their diagnosis and their device,” he said. “Because, if you wait until you’re nineteen and your device is destroyed and you just have to have something, you basically get what you get—and that’s not always going to provide the best outcome. You may not connect with that person, their expertise may be in a different area than what your diagnosis is, or they may be a little rusty with your particular device.”

Transition planning involves significant work and time for practitioners, and many don’t know they can be reimbursed for their services. Cascade DAFO

How pediatric practitioners can help

DeWees stressed the need for providers to start talking early about transition with patients and families. The AAP and others suggest beginning these conversations no later than age 12, but DeWees starts introducing the concept even earlier.

“It’s never too early to start talking about it,” he said. “I’d rather start talking when my patient is six rather than twelve, for example,” he said. “If you’re preparing for that transition all the way through treatment, it doesn’t come as a surprise. You can start parsing the concept in terms of how the device you’re doing might look different next year or in five years, explaining how the body is going to get bigger and what that might mean for device options, or how activity is going to change over time. You can start the conversation about transition from pediatric care by talking about transitions they might experience within pediatric care.”

As his patients reach their mid-teens, DeWees ramps up messaging about the need to prepare for the change in care. For kids with lower extremity conditions, this often means identifying not just a single provider, but an entire care team.

“I try to have conversations with both patients and their parents, because I see teenagers all day long and I know they don’t listen to me,” he said. “I say, ‘Hey, it’s time to think about finding a physician who is comfortable with your diagnosis and supervising your care, and you also need to find somebody like me, who’s capable of providing you with the device you need, and you need to find a physical therapist who understands your needs, and so on. That kind of nuanced care goes so much better when you have time to research and to look for the right providers.”

Then, he repeats some version of that conversation at every opportunity. “When people start to hear it over and over they often start to get the message that, hey, we really need to do this,” he said.

Labhard encourages her young patients to get a new device prescription at their last encounter with their pediatric provider. “That gives patients a couple of years to get established with someone else,” she said. But, like DeWees, she hopes that young patients and their families will start the search for providers who fit their needs and understand their diagnosis long before they must leave pediatric care.

“For children who need orthotic and prosthetic services, for example, I go to the American Board for Certification in Orthotics, Prosthetics, and Pedorthics website to find several certified providers geographically close to the patient so they will have some choice,” she said.

The patient’s location can limit options, and sometimes, she said, pediatric providers need to reach out personally to their network of colleagues to find a practitioner who will be good fit for their transitioning patient.

Insurance is also a major issue, and Labhard advises pediatric providers to have conversations about potential changes in coverage with patients and families as early as possible. “Sometimes it’s easier to find the practice and provider you like and then get the insurance they take, especially in remote areas,” she said.

Got Transition. The primary guide for transitioning from pediatric to adult care

The American Medical Association’s Current Procedural Terminology (CPT) and the Centers for Medicare and Medicaid Services have addressed the importance of care management and coordination services through code development for vulnerable care scenarios such as chronic care coordination and behavioral health.[4] Although there is not yet a code specifically defined as pediatric-to-adult transition, newly developed care management services offer an opportunity to report fee-for-service for many elements of transitional care.[4]

Several coding options are available to support transition services in both pediatric and adult care settings. In addition to evaluation and management codes for face-to-face visits, CPT includes services that address prolonged services with or without direct patient contact, medical team conferences, care plan oversight, preventive medicine counseling and behavior change interventions, interprofessional online and/or telephone consultations, and chronic and complex chronic care management.[4]

Labhard also noted the transition process typically requires a large outlay of emotional energy from providers.

“Take care of yourself first,” she cautioned. “We can’t burn out, we have to help those patients and families. I have to constantly renew myself. I can’t be blinking on that last bar and expect to be enthusiastic and positive with patients and families. You can only do that by taking care of yourself: by eating well, getting sleep, and surrounding yourself with things that make you positive and happy— then you can give.”